Open & Honest Communication with Parkinson’s Patients – Tips for Family Members

During my time working in the field as an apomorphine therapy specialist across the country, I’ve experienced countless times during my regular and routine home visits, sitting at the kitchen table between my patients and their caregivers, and the communication between the family members was strained and disharmonious. Always – but especially now during Advent, which we celebrate in Christian culture before Christmas – we should pay more attention to good, peaceful and respectful communication and interaction with one another.

This brings me to the point where I want to address this in today’s blog post and offer a few helpful tips for peaceful and harmonious coexistence.

Yes, dealing with neurological patients is sometimes difficult. But neither is Parkinson’s disease.

A diagnosis of Parkinson’s disease changes not only the life of the affected person, but also that of those around them. Family members often face the challenge of understanding the disease, responding appropriately, and maintaining a balance between care, consideration, and open communication.

But honest, respectful, and continuous communication is one of the most important building blocks for living with the disease – not against it.

1. The Moment of Diagnosis – between shock, fear, and uncertainty

A Parkinson’s diagnosis comes as a surprise to many sufferers. Even if initial symptoms such as tremor, stiffness, or slowed movements have been known for some time – sometimes several years – the diagnosis and the doctor’s declaration of “It’s Parkinson’s” often come as a shock. The period immediately following the diagnosis is characterized by uncertainty and fear – for both patients and their families.

What family members should know:

🔸During this phase, listening is more important than talking.
🔸The patient needs space for emotions – fear, anger, sadness, or denial are normal reactions and are allowed.
🔸Open communication now means: not sugarcoating, but also not dramatizing.
🔸Phrases like “We’ll get through this together” or “I’m here for you, no matter what” can provide support without
making false promises.

Tip: Encourage the person with Parkinson’s to ask questions at their next doctor’s appointment – ​​and make it possible for you to accompany them to appointments. This provides security and builds trust. It also helps avoid misinformation.

2. The First Years – Adjustment, Medication, and Daily Structure

In the first years of the disease, many Parkinson’s patients are still independent. As the disease progresses, however, they increasingly need support in organizing their daily lives and managing medication.

Communication during this phase:
🔸Talk about routines: Parkinson’s patients benefit greatly from regularity, both in taking medication and in
meals, exercise, and sleep.
🔸Make suggestions – but avoid patronizing the patient.

Example: Instead of “You have to take your tablet now!”, say “Have you taken your tablet yet, or should I remind you?”

Explain why routine is important: Medications only work reliably if they are taken at the right time and regularly.
As you know, there is a strong connection between food intake and medication intake, or rather, medication
effects, especially with L-DOPA. The right timing, with sufficient time between food and taking the tablet, is
crucial here. The more consistently and routinely this is done from the beginning, the easier it will be for the
patient as the illness progresses, and the more reliably the medication can work.

Tip: Shared rituals create security – such as set mealtimes or walks. This provides structure and prevents stress, which can exacerbate symptoms.

3. Fear, shame, and withdrawal – openly address emotional aspects

Many Parkinson’s patients struggle with self-esteem issues, feelings of shame (e.g., due to tremor, speech changes, or increased salivation), and the fear of being a burden. When family members avoid these topics, a silent withdrawal quickly develops.

How to Respond Honestly but Sensitively:
🔸Address fears directly but sensitively.
Example: “I notice you’re withdrawing. Are you worried about how others will react?”
🔸Provide space to talk about losses -for example, the loss of independence or retirement from work.
🔸Validate feelings without judging them.
Example: “I understand that this is frustrating for you.”

Important: Avoid phrases like “It’s not that bad” – this can create the feeling of not being taken seriously.

4. Complex disease courses and difficult situations

As the disease progresses, movements become more difficult, medication schedules become more complex, and mood swings become more frequent. Some patients develop depressive moods or irritability – often as a result of medication or frustration with the restrictions.

Communication with Difficult Patients:
🔸Remain calm and patient – ​​even if the tone becomes harsher. Irritability is usually a symptom, not a personal
attack.
🔸If aggressive or dismissive behavior occurs, it helps to take a break and continue the conversation later.
🔸Show understanding, but also set clear boundaries if necessary.
Example: “I notice you’re very tense right now. Let’s talk later, when you’ve calmed down a bit.”

For Complex Medication Schedules:
🔸Use reminders such as pill boxes, smartphone apps, or alarm clocks.
🔸Keep a shared medication list with dosages and times of administration – this makes it easier to keep track of
them during doctor visits or hospital stays.
🔸Talk openly about side effects – especially if there are significant changes in behavior or mood.

5. The importance of routine, trust, and mutual adjustment

Parkinson’s requires a high degree of adjustment – ​​from patients and their families. Routine is not a rigid corset, but a framework that provides stability.

Basic communication rules during this phase:

🔸Transparency: Discuss changes in the daily routine early on.
🔸Involvement: Let the patient make decisions wherever possible. This strengthens self-esteem and control.
🔸Empathy: Try to see everyday life from their perspective – how movements feel, how strenuous simple tasks
are.

Tip: Humor can help ease tension. Sharing laughter – over small mishaps or memories – creates closeness and lightness.

6. When words are difficult – communication beyond language

Parkinson’s patients usually have no intellectual impairment, but rather a quiet, monotonous, weak, or shaky voice. This is called dysarthria or hypophonia.

My tips are:
🔸Maintain verbal communication as normal as possible
🔸Encourage patients to speak loudly and clearly
🔸Closely observe facial expressions and body language
🔸Focus on the content
🔸Reduce distractions (bradyphrenia)
🔸Give time to respond and formulate

Later on, as the disease progresses, speech may become more and more unclear or diminish. This is where nonverbal signals become more important:
🔸Maintain eye contact
🔸Gentle touches or gestures of affection
🔸Patience in listening – sentences may take time
🔸Not speaking for the patient if they can do it themselves

This maintains a sense of self-efficacy and dignity – 2 things that are invaluable in Parkinson’s.

Conclusion: Openness as the key to togetherness

Open and honest communication with Parkinson’s patients doesn’t mean always finding the right words – but rather a willingness to listen, empathize, and seek solutions together.

It is the foundation for trust, respect, and mutual strength – especially in difficult times.
Because communication is more than language – it is a relationship.

Additional tips for family members:
🔸Get support from support groups or counseling centers.
🔸Pay attention to your own mental health – overexertion doesn’t help anyone. 

Helpful links:

🔗 https://medisafeapp.com/
🔗https://medisafeapp.com/
🔗https://www.parkinsons.org.uk/
🔗https://parkinsonseurope.org/
🔗https://www.parkinsons.org.au/
🔗https://www.parkinson-selbsthilfe.at/